Re: welcome, group ?

April 30, 2001

Tony Klement wrote:

> The concern i have is that it contains

> probiotics-- " HOS's " Homeostatic Soil Organisms--the good bacteria that

> live in pure dirt that hasn't been contaminated with synthetic stuff.

> It claims to to boost the immune system by increasing B-cell production,

> leaving you with extra unnamed antibodies, ready to go after whatever

> comes along, so increasing the immunoglobulins. ( I know this won't

> " heal " my IgA def), and by increasing killer T-cells.

Maurita,

I've not heard of the supplement you descibed, but I would have the same

concerns about it that you do -- I believe that anything which increases

Ig's or other antibodies across the board (as opposed to being created

for the specific purpose of fighting an organism that the body has seen

as foreign and has labeled for attack) has the *potential* to create

autoantibodies (antibodies against self). This is not something I've

seen in research, but it's essentially the same mechanism as echinacea

and any other number of immune-boosting products on the market....

increase production across the board and hope that more antibodies are

created to fight legitimate illness than created to fight oneself.

Sounds worrisome to me, particularly since some PIDs are associated with

higher incidence of autoimmune disease, anyway.

Also, your description mentioned that it increases the number of B

cells. I guess my concern would be *how* it does so. If you are just

simply creating a population of diverse, " mortal " (as opposed to

immortal, as I'll explain in a minute -- so what I mean is that they are

cells programmed for a natural death, and they die when their time's

up), and active B cells, it would probably be helpful. BUT, one of the

reasons people with some PIDs are prone to lymphoma is that viruses and

other triggers can cause B cells to become immortalized -- that is, the

cell line doesn't die off properly, and therefore the absolute number of

B cells in the blood increases. But when these cells persist, they can

begin dividing out of control (unchecked by T cell surveillance), and

that can lead to lymphoma. So, just seeing that something causes you

to have more B cells doesn't mean that it's actually benefiting you, and

in fact, may well be setting you up for more serious illness.

Incidentally, there's a new product being tested for CVID (and probably

IgA deficiency, soon), which is called BLyS -- B Lymphocyte Stimulator.

This has been considered a potential treatment for PIDs because it

does the same thing (in rat testing) as this probiotic formula you're

discussing -- it increases the Ig's (without necessarily having a

specific target) and increases the # of B cells. That research was done

in rats, though, not people. The med will be going to phase one trials

(in humans) in the very near future (if it's not already in there), but

after reading what I've read about it, I personally wouldn't take the

chance on taking it now -- for exactly the reasons I discussed above.

The very first time that protein was identified was because it triggered

autoimmunity in rats -- it took a number of years for people to consider

it potentially applicable to people with PIDs, but just the idea that

something was first described as a trigger for autoimmunity makes me

very leery of the med. I just mention BLyS because the final clinical

result of these two meds/supplements/whatever you call them, is very

similar, and I think both should be approached cautiously. I admit that

discussing the two substances together might not be a fair

association... but I just bring them up together because I think the

take-home point is that your concerns are valid -- and that medications

and supplements have to be approached carefully, despite the hype from

our society. I also admit that what I'm saying about BLyS -- and

correspondingly about the probiotic you've described -- is only based on

three articles (because when I did a BLyS literature search last summer,

when it was first announced by Human Genome Sciences as a potential

treatment for CVID, there were only 6 articles on BLyS in the Medline

database, and three weren't applicable to humans). Most of it is just

my opinion, though.... I'll be interested to hear what your

immunologist has to say about it, as I know he is well-versed in PID

care.

Hope that you and the boys are doing well, and that you're having a

relatively calm pregnancy!

Take care,

April 30, 2001